Hip Surgery and ME: Society Has It Wrong

An excellent article from the husband of a woman with ME, contrasting her illness with his major surgery for a hip replacement, and how differently each is viewed and treated by society. It’s very good. I hope you take the time to read it. Please understand ME.

Thoughts About M.E.

I am proud to share a note that my husband, Ed Burmeister, wrote last week. He initially posted it on Facebook only where it received a lot of attention and was shared more than 250 times. It really resonated with the community.

Therefore, I talked him into allowing me to post it here as well. I am blessed to have such a supportive and loving spouse.

Last Wednesday, I had a complete hip replacement.  It was a short procedure (1-1/2hours). No general anesthesia required.  I was out of bed the day of surgery and home after two days.  On Monday, I started driving again and really could have done so on Saturday already. Yesterday, I returned to work. I was comfortably working away, largely free of pain.  I walk without a limp and with no assistance and am pretty much unrestricted in my activities. I never needed narcotic painkillers after…

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UPCOMING RELEASE: “Passage” by Bianca Bowers

I’m looking forward to this release of Bianca Bowers second book of poetry! Keep a look out for it!

10 Tips To Instantly Improve Your Writing

Good advice on writing from a new printing house, Paperfield Press.

Are you ready to submit?

Do you have a manuscript ready for submission for publication? The new PaperFields Press, run by two amazing women, is holding their reading period and now accepting submissions! What a wonderful opportunity for writers. Although this is a new endeavor for Bianca and Oloriel, I see great success ahead for them. They are strong, hard-working, and dedicated women who are talented on so many different levels. I know they’ll be wonderful to work with and will give a fair and honest appraisal on all their readings. Best wishes, Ladies, as well as to all those submitting their work!

What It’s Really Like To Be Chronically Ill

A good article. This is pretty much what it’s like. Thanks to Lauren Anne for sharing.

Welcome to PaperFields Press

Fibromyalgia Awareness Day 2014

Fibromyalgia Awareness Day 2014By: Sue Ingebretson, ProHealth

What’s fibromyalgia awareness all about? And, do we really need more of it?

Asking those who suffer from this illness to be aware of fibromyalgia is like asking a flame to be aware of its heat.

Fibromyalgia is with us every waking moment (and in many pseudo-sleeping moments as well). We think about fibromyalgia as we get up in the morning, as we prepare meals, and as we function throughout the day. It’s not typically far from our awareness.

Fibro newbies may require more information, but what about the rest of society?

What about those who don’t have fibromyalgia?

They’re predominantly the ones for whom Fibromyalgia Awareness events were created. It’s one thing to express your health concerns and challenges with your family and loved ones. It’s another to try and express your feelings beyond that.

Public awareness is necessary for a number of reasons. Here are just a few listed below:

  • To set a precedence and give significance for this important diagnosis
  • To advocate for and support the rights of those diagnosed with fibromyalgia
  • To inform and educate those who are newly diagnosed with fibromyalgia
  • To inform and educate caretakers of those diagnosed with fibromyalgia
  • To create a unified definition of what fibromyalgia is (and what it isn’t)
  • To create a unified definition of how to diagnose fibromyalgia
  • To educate the public as to the truths and myths of fibromyalgia
  • To give a voice to the emotions, experiences, and lifestyle compromises brought on by living with fibromyalgia
  • To unify patients and their needs with appropriate practitioners and effective treatments
  • To share hope and encouragements for new and exciting fibromyalgia treatment options

These reasons are just the beginning. I’ve participated in Fibromyalgia Awareness Day events for more than a decade. I’ve done large-scale walk-a-thons, lectures, book signings, and all sorts of fundraisers. The community events vary widely and even the same organizations change the type of events they hold from year to year.

Why acknowledge fibromyalgia on ONE specific day of the year?

Since 1993, May 12th has been designated as an awareness day for Chronic Immunological and Neurological diseases which includes fibromyalgia, ME/CFS, and more.

Why May 12th?

It just happens to be Florence Nightingale’s birthday. She was – as you may recall – an English Army nurse who contracted a lingering and painful disease that defied diagnosis (sound familiar?). She was an inspiration to all as she pursued her passions to care for others, inspiring the International Red Cross and eventually founding the world’s first School of Nursing.

Focusing our fibromyalgia awareness efforts on one specific day helps for several reasons. It’s more efficient to plan events in advance with the same target date each year. It also makes it easier to plan to attend these events. Most large organizations arrange for their awareness day program to take place on the nearest weekend to the 12th of May. Additionally, awareness day events help to garner media attention for this cause due to multiple public activities taking place on the same day. Many awareness day events continue to take place throughout the month of May (and beyond), not just on or near the 12th.

The fall also happens to be a time of increased activity regarding fibromyalgia awareness. September is National Pain Awareness month and October is Disability Awareness month. Many Invisible Disability organizations organize events for that time of year.

The Fibromyalgia Coalition also hosts an annual conference every fall. This year, it will be held in November and you can find out more about the Fibromyalgia Coalition Conference here.

So, what do you have planned for Fibromyalgia Awareness Day? What do you see as most important when you think of how to increase awareness regarding fibromyalgia?

To start, check out Fibromyalgia Awareness Day information at a national level from the National Fibromyalgia and Chronic Pain Association. On their site, you can also look up support groups in your area to determine what additional events may take place close to you.

Getting involved is always a good way to feel empowered about your own health. Feeling involved helps you to engage in life. It helps you to connect and derive a sense of passion and purpose.

No one can say it better than Florence Nightingale herself: “Live life when you have it. Life is a splendid gift – there is nothing small about it.”

Sue Ingebretson (www.RebuildingWellness.com) is an author, speaker, certified holistic health care practitioner and the director of program development for the Fibromyalgia and Chronic Pain Center at California State University, Fullerton. She is also a Patient Advocate/Fibromyalgia Expert for the Alliance Health website and a Fibromyalgia writer for the ProHealth website community. Her #1 Amazon best-selling chronic illness book, FibroWHYalgia, details her own journey from chronic illness to chronic wellness. She is also the creator of the FibroFrog™– a therapeutic stress-relieving tool which provides powerful healing benefits with fun and whimsy.

International Awareness Day Coming For ME/CFS, Fibromyalgia, MCS

May 12th! This Is Your Day!

By Erica Verrillo • www.ProHealth.com • April 20, 2014

This year marks the 30th anniversary of the Incline Village outbreak, making this a special May 12th for people with ME/CFS.May 12th! This Is Your Day!
For those who are not familiar with the history of May 12th International ME/CFS and FM Awareness Day, it was started in 1992 by Tom Hennessy to promote awareness of chronic neuro-immune diseases, including ME/CFS, FM, MCS and GWI.  Tom chose May 12th as ME/CFS Awareness Day to commemorate the life of Florence Nightingale, who suffered from an illness much like ME/CFS (probably brucellosis). May 12th is her birthday.
Tragically, Tom died in September 2013 after a 25-year battle with ME. He was 59 years old.
Why hold an awareness day?

International awareness days are intended to draw attention to specific medical or ethical problems. They are particularly important for diseases that are poorly understood by the general public, such as ME/CFS, Gulf War Illness, and fibromyalgia. Awareness events that draw media attention are good opportunities to present the facts about the illness, and to correct misconceptions.

In the case of ME/CFS, most physicians, as well as the general public, believe that the disease is not particularly serious, or that it’s psychological. The only way to challenge those beliefs is to hold an event that will increase their understanding of how the illness affects people. This is called raising awareness, and it’s a necessary step, not just for educating the public, but for gaining acceptance in the medical community.

An international awareness day not only helps educate the public, it provides fundraising opportunities for charities and for organizations that advocate for the patient community. Usually, these organizations are small and any funds that can be garnered through a May 12th event, will go a long way to furthering their mission to aid the community.

Having an awareness day allows many local groups to plan simultaneous events. These combined efforts go a long way toward promoting the interests of those who are ill and disabled. Even if you can only send an email or a tweet, you are part of a much larger global effort.  With thousands of individual actions, however small, we can raise a mighty voice. This is your chance to support the courageous individuals and organizations trying to make life better for those with ME and CFS.

How you can participate

There are many events, worldwide, to commemorate May 12th, not all of which involve travel, or even an expenditure of energy. There are email campaigns (this is a good time to contact your representative!), twitter campaigns and thunderclaps, as well as online fundraisers. Every act of participation during this week, no matter how seemingly small, amplifies the efforts of everyone one else.

Contact your representative

For US citizens, it is very easy to contact your representatives.

Simply go to Contacting Congress. Click HERE.

Type in your zip code. Your representatives will pop up, along with contact links. Fill out the form. (You only have to do this the first time. It will fill automatically in the future.)

Paste your message into the box and click Send!

Are you at a loss for what to say? These are some key points that you may want to mention:

I am a constituent who is ill with myalgic encephalomyelitis, also known as chronic fatigue syndrome. In spite of affecting over a million people in the US, this is a disease which has gotten very little funding over the past three decades. ME is not a benign disease. It has disabled hundreds of thousands of people in the US, and, in some of the more severe cases, has been fatal. The economic loss in the U.S. is calculated to be $17-23 billion dollars annually. Please ask NIH to allocate more funds to study this illness, and to help find a cure.

UK citizens, find your MPs here.
Currently it is estimated that some 250,000 people in Britain are affected by this illness. A report by Sheffield Hallam University’s Survey and Statistical Research Centre estimated M.E.s cost to the UK at 6.4 billion pounds per year. 

Australians, find your MP here.
150,000 Australians are estimated to have ME/CFS. In 1992,  Lloyd and Pender estimated that ME/CFS cost the Australian government in excess of $25 million and cost the Australian community approximately AU $59 million. Imagine what the economic losses must be today.

Canadians, find your MP here.
341,000 Canadians have been diagnosed with ME/CFS.


A Thunderclap is a crowd-speaking platform that helps people be heard by saying something together. If the supporter goal is reached, Thunderclap will blast out a timed Twitter, Facebook, or Tumblr post from all your supporters, creating a wave of attention. The beauty of Thunderclaps is that they are absolutely effortless. All you have to do is click.

There are three thunderclaps planned for May:

May 12th International Awareness Day

Tell the world! Today is May 12th International Awareness Day for ME/CFS & FM

Stop the IOM, Adopt the CCC

If you write a blog, Just ME has scheduled a blog bomb for May 12. What’s a blog bomb? It’s a timed release of blogs about a single topic. In this case, blogs about ME/CFS, FM, or chronic Lyme disease  would all be posted on May 12, and then shared via twitter and Facebook. Read more about it here.

US Activities for May 12th Awareness Day

San Francisco, CA

On Monday, May 12 from noon – 1PM, there will be a gathering in front of the regional HHS headquarters at the Federal Building, located at 90 7th Street.

This will be a peaceful event. (A permit has been obtained.) The theme for this gathering is “30 Years of Neglect,” a message which will be displayed prominently on a banner.

Portraits of people who have died of ME/CFS will be placed in empty wheelchairs, in order to draw attention to the fact that ME/CFS is not a benign disease, and that it not only disables but can be fatal. After the gathering, those who wish to send a message to our representatives can join us in McKesson Plaza (five blocks away) in front of Senator Feinstein’s office. A bathroom is available in the café next to the Federal Building, as is food. If you are in the Bay Area, please join us!

For more information contact: Erica Verrillo : everrillo@yahoo.com

Washington, DC

There will be a demonstration at the Capitol Building on Monday, May 12, from noon to 1:30 PM. Our representatives need to be aware that ME/CFS is a serious disease. We are their constituents, and we vote!

The federal government needs to see that we carePlease join us in Washington!

Please contact Mary Dimmock at MECFSAction@yahoo.com for more details.

Please let Mary know if you would like to attend so she can finalize plans for the event.

Worldwide activities for May 12 Awareness Day

May 12th Facebook page: This is a great resource for finding out what is going on  – and where.

May 12 Neuroimmune Diseases International Awareness Day: This site has links to events all over the world. The list is updated, so check often to see if there is an event in your area.

FM/CFS/ME Resources: Provides good tips for how to get involved without expending a lot of energy.

Please Create a Doodle: This is a Facebook page with all sorts of events, fundraisers, and other ways to increase awareness.
The ME Association: (UK) A long list of various events (in the UK) is posted here.
Walk for ME: This group sponsors public walkathons in the UK to help draw attention to ME/CFS.

MEFM Action Network Facebook page features May 12 events all around Canada.

ME/CFS Australia is hosting a high tea and other events for May 12th awareness.

Continue reading

Absence Makes The Heart Grow Fonder?

Hi Folks,

I apologize for my continued absence. You might remember I spoke about having some eye problems the end of last year, which the doctor thought was a passing virus. Unfortunately, after a brief respite where I could see properly, the problem returned. I’ve been plagued with eye pain, fuzzy vision, and headaches ever since. My time on the computer has been very limited, due to the fact I can’t see. I don’t know if this is related to any of my other illnesses, or not.

Luckily, I learned touch typing way back in high school, so this message should be typed out mostly correct. I see the Ophthalmologist this afternoon, so maybe she can start figuring out what’s gone wrong with my eyes. In the meantime, I’ll try to keep reblogging interesting articles other people have written. The old “Let me entertain you,” schtick.

So, my apologies for disappearing. I hope you all stick around, because I will be back online.

Thank you,

Linda Williams Stirling

Issue #2 is out!

Come check out a new online literary magazine featuring art, poetry, stories, and more! I think you’ll be glad you did.

Take care,
Linda Williams Stirling